Wednesday, May 10, 2017

The HB Update

So HB is autistic.  And we've been pursing services for him in three avenues: the school under IDEA, private medical, and public through the State Department. I'm going to be outlining what's been going on through all three.  It's mostly for the benefit of family members, but if you are interested in how this all works or are yourself in the thick of disability life, feel free to read on.  I warn you that my typing is egregious and I doubt I'll do much to fix that.  If you have any questions, feel free to ask.

State Department:
HB has a case worker with the State of Arizona's Department of Economic Security.  They have a sub department called the Department of Developmental Disabilities or (DDD) for short.  They work in conjunction with Medicaid through a long term program for people with disabilities.  Despite being a minor, we attempted to sign him up part of the adult program which is called ALTECS (another annoying acronym).  You must qualify both financially, which HB doesn't have much to his name being 7, and medically. They give therapy.  We applied over a year ago.  Today we found out that he's not medically qualified because he's not considered likely to be institutionalized.  His DDD caseworker isn't sure where to go from here.  Fortunately he's still eligible to be under the DDD's supervision and there role is to ensure that he has an advocate for medical care.  What that means I don't know.  So my son's disabled but not disabled enough. I'm not sure how to react to that.  Because....

He falls under IDEA and has an IEP which a disabled child receives when they are disabled enough to need some sort of intervention.  His school provides him both with Occupational Therapy services and Speech Services.  We recently revised his IEP to switch him from an academic strategy to a behavioral one.  I pushed for and we have received and in school assistant.  It has made all the difference for him because he is developmentally behind in areas like emotional regulation, fluid reasoning, and socialization.  These are all behavioral pieces not necessarily academic ones.  It's a bit strange sounding I know.  HB has always been brilliant, but he can't focus himself yet.  He's developmental behind but not out.  I know because finally this year I've got him to take a shower by himself.  To explain it, he's known how to bathe himself for a long time, he just couldn't make himself do it.  Does that make sense?  It's like his little brain understands things but he can't seem to put them into practice after he learns them.  I have to push him to keep trying until he wants it for himself.  I think this is common among autistics which is why some children are mislabeled as being stubborn.  The struggle is real.  And we need all the help we can get.

Which brings me to the last piece, we've been getting in home help through private insurance.  We've been getting ABA therapy which is one of those tricky controversial therapies.  So far my husband and I are mixed about it.  We've already lost two therapists and we don't think they're actually trained people with degrees.  All of them have been young and in school.  It seems this particular organization cuts costs by hiring anyone with a high school diploma who can run an Ipad.  Then they train them.  This is then overseen by someone who has actually training and can make notes, suggestions, and changes to therapy.  It's all play but the idea is to sort of shape and mold his behavior in the same way all parents do.  My husband is under the impression that we could get trained ourselves and save ourselves the headache and money.  He's probably right.  We're supposed to be having a parent teaching session ourselves in a couple of weeks so I may ask then.  Personally I think that would be the smarter move for parents with autistics.  Teach us how to teach and raise our children since there really isn't some parenting classes when you bring home a child with autism like you bring home a baby.  If you ask me with the raising rates of autism, it should be something parents are taught to look out for in their baby's behavior.  I really don't think HB had colic at all as an infant.  I think he was always autistic so he cried more than typical babies do.

Has the therapy been working?  It seems to be.  He still gets upset.  He is human after all, but his physical aggression is at a normal level these days.  He's less likely to slam things around, hurt other people, or bang his head against the wall (although this has increased a bit of late I think in part because he's human and does get frustrated).  Some of it may be maturity and some may be the therapy working on his listening skills and his verbal skills.  I'm not entirely sure.  I have always worked with him step by step so it's hard for me to weed out what they've been doing versus what I've been doing too.  At any rate, we're sticking with the therapy for now until we decide it's not working or he's to a level that we as a family can handle on our own.

I hope this has been informative.  Sorry it's a bit incoherent.  I'm just worn out for some reason today.

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